Polycystic Liver Disease (PLD): Let's support each other

Never heard of it (fortunately, I think). Best wishes.

@bluemoon522 - I'll let others in this discussion chime in about whether they may have NETs as well, but I also wanted to be sure you were aware of the active Mayo Clinic Connect NETs support group.

- Neuroendocrine Tumors (NETs) Support Group https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

@bluemoon522: NETS is Neuroendocrine Cancer. You can read diverse posts regarding NET symptoms, treatments, etc. on Mayo Connect Neuroendocrine Group. Also There are several online NET resources available through Lacnets, NETRF, you will find online. Educate yourself on this new medical diagnosis - this will give you the ability to adjust to your Net cancer.

@iowachica
Hi
Somehow i never saw this sooner. I had liver de roofing in 1999 and then again in 2014 so about 15 years apart. I recently have had some cyst bleeds and after MRI my liver specialist referred to the surgical team. My right lobe is basically all cysts. They do not recommend anything other than liver resection to remove tge right lobe. I had the same recommendation from a second top surgeon both from highly respectable hospitals. I’ve decided unless tge bleeds are more often or my daily quality of life is affected im going to just continually monitor with my care team.
Best wishes to you.

Hello,
I'm currently in perimenopause, and it's been two years since my de-roofing surgery. Within the past year, one cyst has returned and is now measuring 8 cm.
From what I understand, there are currently no medications available to slow cyst growth. However, I've come across some literature suggesting that exercise may help control growth, while estrogen may be linked to cyst development.
I have a few questions for others with similar experiences:

1. How often do you see your hepatologist for monitoring?
2. How have you been managing perimenopause or menopause?
3. What types of exercise have you found enjoyable and sustainable?

Thank you for sharing your experiences.

Hello everyone,

I’m originally from Hong Kong and now live in California.

I was recently diagnosed with Polycystic Liver Disease (PLD). My liver function is still normal, and my doctors and I have decided on conservative management with regular monitoring.

The symptom that affects me the most is persistent back pain. Unlike many people with PLD, abdominal bloating is not my main concern. Instead, I have pain across most of my back, especially in my upper and middle back. I’m trying to understand whether this could be related to my enlarged liver and liver cysts, or whether others with PLD have had a similar experience.

Has anyone else experienced widespread upper or mid-back pain because of PLD? If so, what helped? Did physical therapy, changes in posture, medication, or treatment of the liver cysts make a difference?

I would also appreciate hearing how you and your doctors determined whether your pain was caused by PLD or by something else.

Living with a rare disease can feel lonely, so I’m grateful to have found this community. Thank you for sharing your experiences.

Hi IowaChica,
I am currently dealing with menopause and PLD for a year and Chinese herbs really help with my menopause symptoms but that requires daily medication and it’s expensive. We are talking about 1000 dollars a month. But the meds help relieve my other PLD related symptoms. I have been on the Chinese herbs TCM since March 2026 and the symptoms has improved by 50%. Would you mind sharing what other symptoms that you experience with your cysts?
@iowachica